Tuesday, May 23, 2017

Bob Marley

May 2017

I posted this on my personal Facebook page on May 11th, which was the day Bob Marley died from melanoma. I was surprised by the amount of people that were unaware that melanoma was the cause of his death, so I thought I would share it here as well.

On this day in 1981 Bob Marley died of melanoma. He was only 36 years old and he noticed his melanoma for the first time in 1977 underneath his big toenail. The first doctor that he consulted told him that it was a bruise, likely from his soccer playing. It began to look worse, so Marley consulted another doctor who did a biopsy of the tissue and determined it was melanoma. The recommendation from the doctor was to amputate his toe in order to remove all of the melanoma cells and increase his chance of survival. Marley chose not to do this and did well for a few years without any medical intervention. In 1980 while in NY for a concert, Marley collapsed while jogging. He was taken to the hospital and tests revealed his melanoma had spread to his brain, lungs and stomach. Marley did not believe in western medicine and chose not to follow the treatment plan of his U.S. doctors. Instead he went to Germany for alternative treatments which included exercise, ozone injections and vitamins. Not surprisingly Marley's condition continued to worsen, and he charted a plant to fly home to die in Jamaica.While in flight Marley's condition got so bad that the flight was diverted to Miami where he was admitted to the hospital and passed away. He never made it back home to Jamaica. We tell Marley's story every time we teach about melanoma. He is an excellent example that people with darker skin can get melanoma and it is often in places that do not get much sun exposure like in the mouth, on the tongue, and on the palms of the hands or underneath toenails.

On the subject of Bob Marley I wanted to share this also. I'm the type of person the believes in things happening for a reason and things being meant to be. We bought our first home last fall and struggled a lot with the decision to buy due to the state of my health. We were ready to buy, but at the same time unsure about what the future would bring us. We chose to buy something that Corey could easily afford on his own if I weren't able to work or provide an income. Of course this meant we weren't able to buy the dream home we were hoping for once we had two strong incomes.

When we found our home we walked through once and immediately made a verbal offer. (The seller was home when we viewed). We absolutely fell in love with it. After we got the keys and the seller had moved out I went back to walk through the house by myself, and I noticed this decal on the wall in the guest bedroom for the first time. I think it was covered when we viewed the house... knowing Bob Marley's story and the message itself gave me the strangest feeling. It gave me reassurance that this home, right now was where we were meant to be.

This is the writing that will remain on the wall.

Friday, May 12, 2017

Gamma Knife #4, Mexico and Brain Surgery

April-May, 2017

If you haven't already been overwhelmed by my story, this may be the post to do it! It has definitely been overwhelming to me.

The week before we were due to leave for Mexico I had a brain MRI with some bad news. Two of the brain lesions we had radiated before were larger, and there was one new one. I was still in tears when we got home from my doctor appointment and didn't even have time to take my shoes off before my radiation doctor was calling. She said we needed to radiate those spots and she was willing to do it the following morning. The best thing for easing anxiety is to get things taken care of asap! I didn't even have time to let the bad news settle with me before I was taking care of the issue.  I've been so blessed with amazing doctors that realize the urgency of my situation. I had gamma knife radiation again (for the 4th time) and it was fairly uneventful. I asked the gamma knife nurse what is the most number of times they have treated someone... and he said 5. I'm almost to the MOST amount of sessions that gamma knife center has ever treated someone. Not really the award I'm going for. But this radiation is keeping me going. It's extending my life and keeping my brain clear-ish so that I can continue to live and enjoy my life. I would do this treatment every week if it meant I would stay alive.

The next week we were set to leave on vacation. I got clearance from my oncologist and my neurosurgeon to leave the country, although they weren't excited about the idea. My neurosurgeon sent me with a prescription of dexamethasone, a strong steroid just in case I have swelling from the gamma knife. Thankfully I didn't have any problems or pain while on our vacation.

Our trip was amazing! We flew to Cancun, and then traveled about 40 minutes south to Playa Del Carmen. This was our second trip to Playa, and it was just as great as we remembered. We stayed at an all inclusive resort and went zip-lining over the jungle.

The day after we returned from Mexico I had a horrible headache that woke me up in my sleep and brought me to tears. I also noticed that I had slight vision loss in my left peripheral vision. Very slight, but enough to scare me. The next morning I called my neurosurgeon and he sent me for an urgent MRI that evening. The next day I was at work when my neurosurgeon called me himself. He said that the MRI showed a cyst had formed around one of the lesions that we radiated, and that this is a rare complication of gamma knife radiation. He told me I needed to have brain surgery to remove the cyst tomorrow morning! He wanted me to go home after work, pack a bag and head to the hospital that night so I would be ready for surgery first thing the next morning. This is not the call you want to get during your work day. I was able to keep it together for the next few hours until my work day was done.
When we checked in that night they had a room ready for me on the neurology floor. I didn't really sleep that night, and my surgery ended up getting pushed to late afternoon. As the nurses were prepping me for surgery my neurosurgeon came in to talk about the surgery. If you remember I refer to him as McDreamy. He's young, smart and caring, and not horrible on the eyes. (Somewhere along the line my life has turned into one very long Grey's anatomy episode.)  He talked about the risks involved with the surgery. I would not get back any vision I had lost... and there was a large possibility I would lose even more vision from the surgery itself. The lesion was right in the middle of my visual cortex, which is a dangerous place to be. I thought about how life would be, I may not be able to practice dental hygiene if I have more vision loss... would I be able to drive? so many questions and worries were going through my head that it brought tears to my eyes, not to mention the fact that this is CANCER, and these brain lesions don't seem to easing up anytime soon.
McDreamy saw how upset I was and said "Jen, we aren't just postponing the inevitable by doing all of this... we are keeping you alive until there's a CURE." This was exactly what I needed to hear right before being put under anesthesia for brain surgery. I thought, wow he gets it, McDreamy just gets it. This is what every cancer patient wants to hear. I've met with nearly every oncologist from Eugene to Portland, and most stress the fact that not everyone responds to the treatments available, my condition is bleak, and my prognosis is poor. None have put it so plain and simple as this neurosurgeon.

When I woke up from surgery the first thing I noticed was that I could see my nurse who was standing to my left. I could SEE her. I could see everything perfectly! I had no additional vision loss, and the vision loss I had before was gone. I could see everything clearly. I remember thanking God for the surgery going well, and for keeping my vision.

When I was able to see Corey after surgery he informed me that he had talked to my doctor right after surgery and it turned out that once he had opened me up he saw there was no cyst. Instead there was blood around the dying tumor. It had bled, which was causing my extreme headaches and vision loss. He let the blood drain and removed the dying tumor while he was in there. This was good news, even though it doesn't sound like it. He had less area to remove, and didn't have to mess around too much in there and injure my visual cortex. My post op CT scan looked great. No tumor, no cyst, no blood. It was as if it never happened. God is so good. I can't express the feeling of waking up from surgery and realizing everything went better than expected. I'm so grateful. To my doctor, to God, and to my husband for being by my side.

Tuesday, April 4, 2017

Just a Quick Update

April 4, 2017

Lately I've had several people get a hold of me and ask how I've been doing with my new treatment, which made me realize I haven't updated any of you since I started the Opdivo/ Yervoy combo. 

I started the treatment on February 16th and the next day I had a low grade fever, body aches and chills so bad they made me shake. I was also exhausted and having horrible headaches. This went on for about two weeks after the first and second infusion which was three weeks later. During the first two infusions I was also still taking my previous medications Tafinlar and Mekinist. Those of you that know melanoma medication know that this is an arsenal of very powerful medications! Any one of these medications alone can cause very severe complications, so you can imagine how I was feeling while taking all four. I'm finally off the Taf/Mek and this third infusion went a lot better! It was five days ago, and I've felt great since then. I have the infamous "ipi rash" on my ankles and very slightly on my hands, which doesn't really itch or bother me. Some say that the rash is a sign the meds are working... but I don't know how much data there is to support that claim. 

In March I had a follow up MRI of my shoulder, where that one little tumor is hanging out. It was too soon to see if the meds were working yet, but the goal of the MRI was to see if the tumor had grown to a size where it was necessary to remove it. I've never had any pain from this tumor or even felt it! I forget it's there most of the time. Well the MRI showed that the spot is exactly the same size as it was about six weeks ago when we first found it. This is a good sign, it can mean that the meds are already kicking in and slowing down or stopping the growth. Now we just need it to start KILLING it. I'm hoping on my next scan it will be undetectable. I'm still having headaches so I'll be having a brain MRI soon. It's possible it's a side effect from treatment, but we just want to be sure. 

I know that most of what I write about it scary and unsettling, but please remember that my life outside of the cancer is amazing. I'm in love with my life (almost) every aspect of it. Life in between doctor visits feels very normal and blessed. I'm working in a career I fought hard to achieve, my husband is adoringly sweet and supportive, and life is overall very very good! We have a vacation planned soon for Mexico, and we plan on escaping reality for a while and getting some much needed rest and relaxation.

I was feeling good enough to make it out for a nice hike this weekend. The sun was very bright so we were squinting heavily =)

Sunday, January 22, 2017

Gamma Knife #3 and Pet Scan Results

January 2017

After letting the latest news sink in a little I'm feeling much better. I had gamma knife radiation on December 29th at which they found four very small brain lesions. We zapped all four and I'm hoping and praying that they are shrinking or gone already. In a couple more weeks I'll have a follow up MRI to make sure.

Around the same time of the brain issues I started having a really intense pain in my hip. It was pretty painful to walk for about three weeks so my doctor decided to order an MRI of my spine and hip just to make sure nothing was going on there. The MRI showed two things, first a herniated disc in my lower spine... and also an area in my left pelvic bone which lit up but was impossible to tell if it was melanoma or something else. This prompted a pet scan order. Pet scans are very good at detecting even a very small amount of cancer.

Now comes the interesting part. My pet scan lit up like crazy! Several spots throughout my back and side, groin and scapula. My doctor looked very solemn and said it was time to move to the next treatment option which we have been discussing. I asked him to show me where the spots were on my body. Up until this I have been able to feel almost every single tumor I've had, especially the subcutaneous ones (the ones under the skin in the fatty tissue). I was in disbelief that I could have that many and not feel any of them. He lifted up my shirt to feel the spots that lit up and realized they were exactly where my tattoos are. I have two rather large tattoos on my back and side which I got about twelve years ago. I have noticed that they are a little swollen and inflamed but didn't think very much of it. They have been doing this off and on for the last year, ever since I tried the immunotherapy ipilimumab. Well it turns out that the ipilimumab has given me an allergic reaction to the red ink in my tattoos and is causing pain and inflammation, and pet scans pick up areas of severe inflammation. Lucky for me the major areas along my back and side were lighting up from my tattoos and not from cancer!

The lymph node in my groin also lit up but is not palpable. It could possibly be full of tattoo ink from my body trying to dissolve and get rid of my tattoos. This leaves only the spot in my scapula with no explanation. My doctor can't really tell if it's a spot of melanoma or not, and since this may be the only spot with no explanation we decided to hold off on starting the new treatment and have an MRI of the scapula to tell for sure what it is. Last year I did have a spot of melanoma in that scapula that was surgically removed so it's very possible that it's back in the bone or in the marrow space. I'm keeping my fingers crossed for now and trying my best to stay positive.

My hip did not light up at all, which leads us to believe that the severe pain I've been having in my hip is from the herniated disc. The pain is completely gone now and I'm feeling much better!

This weekend my husband and I attended a seminar in Portland and were able to listen to some of the best melanoma specialists in the region speak about the newest treatment, and what's happening in clinical trials. It was a very uplifting event that I was grateful to be a part of. It gives me hope to see that so many amazing minds are working to find successful treatments for fighters like myself. There's a lot of really big things happening in the world of melanoma and I am determined to hold on long enough for something to come along that will help me. I have an incredible support system of friends and family and an incredible faith that will keep me going until that time comes. I've said it before, but the hardest part of this whole journey is learning to have patience, and faith. Every day is a struggle with the unknown future. All I can do is live in the present and never take a single day for granted.

Pet Scan Attire 

Friday, December 16, 2016

Recent scan results, and picking myself up off the ground

December 16, 2016

My heart feels like it has been shattered into tiny pieces. Over the last couple days I've been debating sharing these scan results with everyone. This journey has felt like a roller-coaster with highs and lows, and I didn't see the point in pulling everyone along for the ride. And then today I realized those who care enough to read this blog want to know it all. They want to celebrate with me, laugh and cry with me, and I felt I needed to be honest with my writing for them.

My brain MRI from last week showed I have TWO new lesions in my brain. My first thoughts were of frustration and defeat, but it's soaked in a little more now. Now I am just scared. I'm terrified. Not of these two tiny intruders, but of the bigger picture. What does this MEAN? Are my medications no longer working? The rest of my body is clear so there is no doubt they are still partially working. But for some reason they have decided to let down their guard and let these melanoma cells set up camp in my brain. I'm confident a course of gamma knife radiation will kill these cells, but how many more will there be? I'm scared of what this means in the long run... or near future. I'm scared that God hasn't been hearing my prayers, and I'm scared that I'm even questioning that.

But I feel fantastic. I feel healthy and happy and kind of like this is all a bad dream. Almost every morning back in 2015 I woke up and remembered I had cancer, and I wanted to cry. I only just recently got to the point where I could wake up in the morning, remember my whole situation and feel happiness instead of fear. I'm trying my hardest to set aside my fear. I'm handing it to God, and to my doctors, and I'm choosing to continue moving forward with life. Like I've said before, as long as I'm not in pain, the cancer is not winning.

I hate feeling vulnerable. I hate others viewing me as weak, or sick. But with that being said I love all of the support and care I've been getting from my friends and family, It motivates me and keeps me going, and if it gets to the point where I need help from others, I won't hesitate to ask for it. If you are someone who believes in the power of prayer please keep me in your thoughts. I promise there will be good news to share again soon, but for now I just need your prayers.

This picture is from my first gamma knife session. But the message still applies...

Thursday, October 6, 2016

Recent Gamma Knife Results, and Full Scan Results

August 2016

Six weeks after my gamma knife session I had a follow up MRI. The 5 mm spot measured exactly the same as it did before the radiation. Sometimes it can take time to see results after gamma knife, and it wasn't any bigger so I was very happy with the MRI results at this point. It's still possible that this spot is NOT cancer, and is a blood vessel deformity. I'm choosing to believe that's what it is, and the fact that it didn't shrink after radiation makes me more confident it is not cancer.

September 2016

The last few weeks I have been having eye issues. My right eye had a fuzzy blind spot and a dull ache around the eye. My ophthalmologist did many tests and took pictures and determined that I have a swollen optic nerve (papilledema). He was very concerned because the main cause of this is increased intracranial pressure from something like a tumor in the brain. I told him that I had an MRI last month which didn't show anything new. He recommended we rush and do another MRI. I was also due for all of my other scans at this time so we scheduled them all asap. During my scan appointment I explained my symptoms to my MRI tech (whom I love!). She told me that either my insurance denied the brain MRI because I just had one... or my doctor didn't order a brain MRI, either way she was only authorized to perform an orbital MRI as well as my body scans. I told her I really was hoping for a brain MRI because an orbital MRI would show that I have a swollen optic nerve... which we already know, but it most likely won't show the cause of it. From what I was told, only a brain MRI would do that. She spoke with the radiologist on the phone immediately and he agreed an MRI of the brain was absolutely necessary to rule out any new brain tumors. He okay'd her to perform the brain MRI at no charge to me, which I am so grateful for! The good thing about being in a small town and going to small centers like this is that they begin to know you and your case personally, you aren't just a name or a patient ID number.

On September 7th I got the news that my body CT was clear, my orbital MRI was clear, and the only thing showing on my brain MRI was the same 5 mm spot that we have radiated. There was nothing new anywhere! That spot was once again the same size which makes me so hopeful that it's nothing to worry about. And even if it is something... it's not growing! Which means that my medication at this point is still working.

Unfortunately I've been back to my ophthalmologist again recently and I still have a swollen optic nerve with no explanation. There are no reports of my medications causing this, although they are so new it is possible. He's going to monitor me closely and see if we can figure it out. Once again, this disease is testing my patience like I never knew possible. We decided to push all of this out of our immediate thoughts, we packed up, and went to Hawaii.
My husband and I, hiking

We visited the beach we got married on four years ago! 

Thursday, June 23, 2016

Gamma Knife Round Two

June 2016

It's been a confusing couple weeks! There was a tiny spot on my latest MRI that was concerning. It was a spot that was there since last August, but we were just watching because it didn't seem to be growing at all over the past ten months leaving us to believe it was benign, a blood vessel abnormality or something like that. Well this last scan showed that it is now a little bigger, and when you have a history of cancer you have to assume it's a tumor. I asked my doctor to get a second opinion from a different radiologist who also thought it was a tumor, because of the way it enhanced on the image. This spot is so tiny, only 5 mm, but is located deep in an area that can't be surgically removed. Our only treatment option is to try gamma knife radiation. Last time I had gamma knife (the huge tumor that I thought we removed surgically, but then it was back and BIGGER than before) worked beautifully, and that spot is no longer visible on my MRI, so I'm feeling very confident it will work again.

I had the procedure on Thursday June 9th, with the same set of doctor's. My radiation oncologist, neurosurgeon, and physicist all remembered me (It's only been ten months since last time), and we joked about how we have to stop meeting like this. The whole ordeal took half the day, but the actual radiation time was only 18 minutes! It was relatively easy, the hardest part was the screws they insert into your skull that hold your head still during the procedure. I went home to watch movies with Corey the rest of the day.

In six weeks we will do a follow up MRI to see if the treatment worked. We aren't sure what this means as far as my medication goes. This may mean that my treatment is beginning to no longer work... or possibly this one tumor is just not responding, but the treatment is still working over all. At this point we are choosing to watch and wait, and currently stay on my medication. This whole process has taught me more patience than I ever imagined possible.
Just after gamma knife radiation